Daniel Aletaha | President of EULAR; Professor and Head of Department of Rheumatology, Medical University of Vienna, Austria
Andrew Cope | Panel member for Basic and Translational Science at EULAR; Head of the Centre for Rheumatic Diseases and Associate Director of the King’s Clinical Trials Unit, King’s College London, UK
Mwidimi Ndosi | Chair of EULAR HPR Committee; Associate Professor in Rheumatology and Nursing, University of the West of England Bristol, UK
Citation: EMJ Rheumatol. 2024;11[1]. https://doi.org/10.33590/emjrheumatol/TATQ2694.
Can you talk us through your role at the European Alliance of Associations for Rheumatology (EULAR) 2024 Congress? And what have been your key priorities within this role?
Aletaha: This is a difficult question, one I’ve been asked many times. It has been very difficult to choose an abstract for this conference, you can tell by my choice that I think understanding the impact of rheumatic diseases is important in quantifying and dealing with diseases that create a lot of impact. The rheumatic and musculoskeletal diseases (RMD) survey that I presented at the Congress is an example. Understanding the osteoarthritis onset is an example of addressing an unmet need of a highly prevalent disease that does create social and economic impact. I think that the future challenges lie in non-inflammatory diseases; inflammatory diseases are more exciting for scientists, and there are new processes and some strange things going on that you can treat. But in terms of the impact, I think the non-inflammatory diseases are really the major challenges for the Congress.
Cope: I have three main roles at this year’s congress. Firstly, the fundamental one is attending as a delegate to listen to various sessions and learn new things. This can range from basic science to the latest research developments and treatment methods, particularly the ‘What’s New’ and ‘What’s HOT’ sessions, so that I can do a better job when I return to my clinics in London, UK. Secondly, I am a speaker at the conference. I’ve given a couple of talks: one on a replication study that was published recently and another during a cancer session. Lastly, my role at the Congress is within European Union (EU) law as I’m a member of a group that comes up with initiatives as part of the United Research Centre. My focus is on the clinical research subcommittee. We are setting up the ENTRI Network of Clinical Trials Centres, our first initiative. Our subcommittee is currently encouraging applications and working on building this network.
Ndosi: For this congress, I am responsible for the programme, specifically for health professionals in rheumatology (HPR). The HPR programme caters for a broad audience of non-physician health professionals that are involved in the care of people with RMDs. This includes a wide variety of professions such as nurses, physiotherapists, occupational therapists, psychologists, podiatrists, and nutritionists. To ensure that the programme meets the educational needs of these professions, we have to get up to speed with the direction of scientific research, clinical developments, and patient needs. My role also includes evaluating the quality of abstracts submitted for the Congress, prioritising those that provide strong evidence, as we aim to ensure that all our interventions are evidence-based. Part of this work also involves recognising and rewarding outstanding research contributions, further supporting advancements in care for people with RMDs.
What are some of the unique challenges associated with providing care in your field? And how do you think the Congress will help to tackle these?
Aletaha: Diseases affecting the musculoskeletal system significantly affect people’s lives, distinguishing them from other diseases. They prevent people from being able to care for themselves or others, go to work, or continue working until retirement age. Therefore, they create a lot of difficulty for those affected and for society as a whole, so we must find ways to manage patients and their situations effectively. Additionally, managing rheumatic diseases quickly and efficiently is not only a medical concern but also an economic one. Early recognition and intervention can reduce the long-term burden on the affected individuals and society. The Congress will feature many presentations and discussions aimed at early disease recognition, the impact of both inflammatory and non-inflammatory diseases, and effective patient monitoring.
Cope: For me, there are two main challenges. First is the lack of sufficient contact with primary care, to get people triaged and into the clinics in the first place. Second is the volume and waiting times, which are horrific, and the National Health Service (NHS), especially in London, is under immense strain. The expectations are high, and the demands within the health sector, not just among health professionals but also between general practitioners and patients, have grown exponentially. Managing this volume of workload has been extremely difficult. There are always specific areas I am keen to explore, particularly the ‘What’s New’ and ‘What’s HOT’ topics. My clinical interest is in rheumatoid arthritis, for which we have many treatments. However, as Aletaha mentioned earlier, we still struggle with conditions like osteoarthritis, pain, and fatigue, where effective treatments are lacking. Attending conferences like this helps get an idea of what’s new and how to do a better job.
Ndosi: My key area is self-management and patient education. The main challenge is that people today are bombarded with information constantly. By the time they consult healthcare professionals, they will have often already searched online and encountered information or misinformation. The real challenge is to identify their specific educational needs. It’s not just about giving information but understanding where patients are in their knowledge and providing the appropriate education. This means correcting misconceptions and ensuring that the information we provide is evidence-based, accurate, and applicable. That is the challenge we face in today’s society.
What are the most impactful initiatives EULAR has implemented recently to advance patient care and research?
Aletaha: I think the EULAR Network of Trial centres (ENTRI) is helping the advancement of science dramatically, by facilitating quicker market access for new drugs and quicker access of knowledge to the broader community. One of the major limitations in clinical trials is recruitment, and ENTRI helps to expedite investigator-initiated studies, addressing this issue. The major scientific evidence comes from clinical science. When you put these efforts together, the impact of ENTRI becomes clear. The rheumatic and musculoskeletal disease impact survey is another initiative that’s important in understanding the disease impacts. Additionally, the RheumaFacts project collects global data on the prevalence of rheumatic diseases, creating a comprehensive database accessible to anyone across Europe to build understanding in the industry, and for policymakers and press, on differences and consistencies in the prevalence of the disease.
Cope: It’s still very early, but I think the response to joining the ENTRI network has been huge. Over the next 1–2 years, getting the network up and running and thoroughly testing will be crucial. We’ve touched a bit on RheumaFacts and other surveys, which aim to understand the quality of care across Europe. This is significant because it will likely reveal inequalities that need to be addressed by the governments and health sectors so that they can make improvements. For instance, even in the UK, there are variations in prescribing patterns, referral rates, and the speed at which patients achieve remission. These variations indicate that there are many irregularities in care pathways that need to be fixed; addressing this will be a major focus moving forward.
Ndosi: Our strategy aims to reduce the impact of RMDs on individuals and societies, which is the focus of the HPR community. One of the key initiatives at EULAR is to broaden education, awareness, best clinical care, prevention, and research. Some people are not aware of our education offers. I would like to highlight that we provide online courses, webinars, and other free materials, depending on need. Providing these resources is crucial for the professional development of our communities. Additionally, research is fundamental to advancing our professions. We have a dedicated research grant programme for healthcare professionals, funding only high-quality proposals. This helps to build the evidence base needed for our field. These initiatives have a significant impact on our community, supporting both education and research to improve patient care and professional development.
What are your main goals and priorities for EU law over the coming years?
Aletaha: I think EULAR will continue to play an important role in global rheumatology. We’re trying to engage with our partner organisations across the world, because we’re all pulling on the same strings and we don’t want to do that in competition, but rather in partnership. EULAR has historically been built on certain pillars: healthcare professionals, patients, scientists, and rheumatologists. Bringing these groups together for the advancement of medicine and rheumatology is something I am really interested in. One of my goals is to strengthen the connection between national societies in Europe and EULAR. Although they are all members of EULAR, I want to enhance their contributions and ensure they fully benefit from what EULAR offers. By fostering closer collaboration and integration, we can advance the field of rheumatology more effectively.
Cope: I’d like to embed the Research Centre into the EULAR community so that people understand that there is a valuable resource that they can use to conduct research and get training and support for research. Those are our main goals. We also aim to identify young talent coming through that we can train and help to excel in these areas. The ENTRI network is our first initiative, and over the next few years we will explore additional ways to support the community, specifically in the area of research. Another area we’re hoping to work closely on is with the patient research partners, I think their role is fundamental. By creating a network of translators, we can identify which centres also have cohorts of patients who are willing to serve as patient experts, because they can provide huge insight into all sorts of things we do.
Ndosi: The coming years will be quite challenging. I’m very passionate about prevention when dealing with long-term conditions, we often focus only on single diseases without considering other related factors. If we think about prevention and look at the patient holistically, we can address multiple areas simultaneously. For instance, interventions like physical activity and education do not only manage existing conditions but also prevent new ones from developing. My ambition is to prevent diseases from occurring in the first place. At EULAR, we share this ambition, and I believe we can achieve significant progress by focusing on comprehensive preventative strategies.
Are there any sessions that you’re particularly looking forward to?
Aletaha: I would really like to see the digital health session. When I attend a Congress without my different roles and committee responsibilities, I like to go to the plenary sessions where the top abstracts are presented and invited speakers share their insights. I also try to attend the highlight sessions. Additionally, we have a recommendation session and the digital health session I mentioned earlier. There are so many interesting sessions, not to mention the escape room and the occasional coffee break that I’d like to squeeze in.
Cope: This conference is all about highlighting various clinical trials. Three of my colleagues are presenting the results of their trials, which is very exciting. Additionally, there was a talk on the history of reactive arthritis and an excellent session on osteoarthritis. There is a wealth of valuable information and many interesting presentations to look forward to.
Ndosi: The sessions that I always tell people not to miss are the abstract sessions. The abstracts present the latest evidence from studies that have recently been published or have not even been published yet. It’s the best way to stay updated on current evidence. I always advise everyone to never miss the abstract sessions. Of course, there are many other interesting sessions beyond abstracts, it’s like a vast menu of fascinating topics to choose from. Truly amazing!
